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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect
Digestive Health | Last Active: Sep 17 2:05pm | Replies (1609)Comment receiving replies
@jlharsh
Hello and thank you for reaching out!! I am sad to hear you are experiencing the same! It is not fun. I had a bout of diverticulitis about 12 years ago. Took antibiotics and never had it return, until July of last year.
Since then it has been non stop in and out of the ER with "diverticulitis flares". We even cut a camping vacation short and considered postponing my dream trip to Greece (we did go 🙂 ) I've learned to stop going to the ER and switch to a liquid/clear diet for a few days and then slowly add in pureed/soft foods until things settle and feel better. I saw a GI Specialist (had an endoscopy and colonoscopy - all good except for a hiatle hernia). Tons of blood work and labs. I was told I had a slight fatty liver. Also worked with a nutritionist in his office monthly. The GI doctor told me to not take any NSAIDS and 'lose weight". I am a size 12/14. Though my tummy at times looks like I am 9 months pregnant. The nutritionist was very happy with my eating (low FODMAP) as well as a bit of Metiterrean style eating (I am greek, so I have always eaten in that style), I have been on two rounds of Bactrim when the flares show as '"complicated". In August I wasn't feeling well (middle and right side of stomach hurting as well as my middle back) and worried maybe it was my appendix or possibly a kidney stone, so I went in to the ER for imaging. I was told my diver wasn't complicated, but they gave me antibiotics just in case. But the ER doctor commented I needed to see my GP because the 'Misty Mesenteric Panniculitis' showed on the CT and hadn't gotten 'any worse or any better' since the CT scan I had 8 months prior. I had never been told about MP until that day. So I visited my GP and her comment was, this is very rare and referred me to a new GI specialist who I have met with once and is waiting on all my records to be sent to her for review. My GP also had me go for a MRI.
I really try not to go to the ER. I usually end up with an IV of toradol, a CT scan, maybe antibiotics or not and 'follow up with my GP'. But yesterday, and the day before I couldn't walk upright or sit, the pain had me moaning. Today pain is around a 7 down from a 10. I just drink bone broth, tea, water. I did manage to eat a scrambled egg this morning. I am so hungry. The only reason I slept last night was I had some leftover pain meds, which I took. I helped take the edge off.
I will review what you sent, thank you. I have done quite a bit of reading and also reached out to a MP Facebook group. I may seek outside medical care depending on what this new GI specialist says. My son lives in Scottsdale AZ and I know there are Mayo Clinic's there, so I have considered care there.
My labs don't show autoimmune (Sjogrens) or cancer, though I read sometimes they actually have to biopsy lymph nodes in the area affected. I do have a higher A1C (was on metformin which feels like poison in my body, so I won't take it any longer. I am at a loss and so tired of not knowing what is causing this. I feel like I just need to stop eating.
Thank you again for reaching out. I believe everyone's experiences help when trying to figure out something not well known.
Replies to "@jlharsh Hello and thank you for reaching out!! I am sad to hear you are experiencing..."
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@aksandralynn, I know taking pain meds is not a solution but I am glad they have given you some relief. You are going through a lot. Thank you for explaining more about your situation. You are doing so many positive things to help yourself get through this and it doesn’t feel like it, but you are making progress.
Some of what you describe is familiar to me, though I need to correct. I was not told I have diverticulitis, rather diverticulosis so definately not as difficult. I found myself in a systemic circulation crisis at home and landed at Mayo, Rochester a few years ago. I was told they knew what was happening but did not know what to do about it. They wanted to help me figure it out and their approach would be to first, protect my heart then take one symptom at a time. It would be a marathon, and it has been. Before getting there I tried several things on my own, one being a visceral massage. It was the lightest pressure you can imagine and resulted in an extreme amount of pain in my abdomen. Like you, my labs haven’t shown autoimmune or cancer. Liver has also been a concern. One thing that goes through my head is something the surgeon who did my hysterectomy a decade ago said to me following…..she mentioned it was a mess and was surprised I ever had children. I continue to put one foot in front of the other, do the next best thing in front of me. With a good care team I am making incremental progress. I hope the same for you.
You mention Mayo Clinic in AZ. That just may be a wonderful option for you. It sounds like you would benefit from their integrative approach and familiarity with uncommon, rare situations.
Here is a link to pursue asking questions and/or making an appointment at Mayo Clinic: http://mayocl.in/1mtmR63
I am interested to hear how you are doing as you continue. You can have your doctor submit a referral to Mayo or you could simply contact them yourself. Do you have a feel for which would work best for you? When is your next scheduled appointment?